It's been a long day. All of it memorable in various ways so this may end up being a long post.
This day began at 10pm last night when I woke up after a brief nap. Dialysis was rough on me. When I say rough I mean painful. I don't know why, but when they use the new access (the cadaver vein graft in my upper right arm) it cuts off circulation to my right hand. My left hand has had problems with circulation during dialysis for a while now so it's no surprise to me when it falls asleep, but when both hands fall asleep - that's new. Again, there's a term here that might need some clarification. When I say my hands "fell asleep" I don't mean they were kinda tingly, and a little numb. No, they were completely useless. I could barely move my fingers, but had the lovely sensation of them being bombarded by a million needles of lidocaine.
If you've never tried to tie your shoes when you can't feel your hands, you should. Or better yet find someone else you can laugh at while they try to do it. It's a good show, I promise.
So after that I needed some rest. I got 3 hours. Thus begins the long night.
My arm is fickle. Although not a seperate entity, it behaves in ways independent of the other limbs, and in defiance of the steady, predictable logic that my mind enjoys. Sometimes it hurts like all hell. Sometimes it doesn't. Surprisingly when it hurts most is after dialysis, when it is in the process of shrinking. The blood and trapped fluid flow out of my arm, the muscles contract, and suddenly my whole arm is alive with burninating. Nothing seems to help but good 'ol painkillers. I'm staying away from the hard stuff, so my old buddy Advil has been close at hand. 600mg every 4-6 hours as needed to make the hurting stop. Last night I needed it. My arm had decided it was time to light up every nerve in my arm just to remind me that it could.
I had an appointment today with the new vascular surgeon at 1pm. I thought that would be late enough that even I could manage a good night's rest beforehand. Not so much. There was no sleep, only Zuul... I mean Bioshock. 5 total hours of running through a FPS version of someone's high school English paper deconstructing Ayn Rand. The metaphors were heavy handed, but I wasn't really playing to ponder Objectivism and morality. I wanted to kill things. Fake things. Things that disappear with a click of a button. Bioshock had a lot of those, and it was so so satisfying.
Wouldn't it be nice if it were just that easy.
But along with the thrill of bashing in the heads of psychotic, doped up, genetically and surgically altered aristocrats, I did get a few smirks from killing Andrew Ryan and Atlas.
Once the daze of a job well done wore off I realized the sun was coming through the window. Another wasted night maybe, but I enjoyed it. It was mine to waste, after all. In hindsight I'm glad I spent it the way I did. There may not be anymore nights like that next week.
The morning hours passed slowly while I waited for the cab to show up to drive me off to this first meeting with the new surgeon. He would be the replacement to Dr. Alexander. After a year of letting that twat fuck up my arm I decided to let someone else have a shot at it. Supposedly the vascular surgeons over at Emanuel Hospital are some of the best in the state, so that's where I went. It was a long time coming, and I should have gone months ago. At the very least, weeks ago.
The cab dropped me off at 12:45. 30 minutes early, but time enough to get a look around the hospital and do all the paperwork and insurance bullshit I have to go through with every doktor. Seriously, you'd think I could keep that info on one of those USB mini-flash drives or something. I could hand it over, let them plug it in to their computers and POW insta-medical file. All the same stupid questions every doktor, hospital, ER, surgeon, anesthesiologist, and random clinic goes over on every visit. Unfortunately that would leave me nothing to do during the obligatory 30 minute wait that accompanies any and every doktor visit. I think it's part of their code. Do no harm, and make them wait.
Eventually I got into the exam room where I got to watch the nurse try and find my pulse. It's a fun game that started last year because of the damage to my vascular system. Nurses can't find my pulse. It freaks them out, and I get a laugh out of it. Not that I usually laugh at the nurses, but it's the newer, lesser skilled ones, that can't figure it out. Laughing at noobs is important. It makes them better people. More importantly, I get to laugh about something.
You might think that after the nurse comes the doktor. Not so. First I got The Resident. I put her name in caps because she stood out. She walked into the exam room like it was hers. The questions she asked were all done with an exasperated, let's get this over with air. I caught the rolling of her eyes as I started to list the reasons I had come to the surgeon. The attitude dropped quickly when she took a look under the bandage on my arm. She was thoroughly unprepared for who and what she was about to encounter. It's pretty funny to watch in a matter of seconds someone go from a self-respecting, together soon-to-be doktor to a confused, twenty-something kid looking for someone to tell them what to do. Even better was when the real surgeon showed up and started ordering around The Resident like she was The Secretary (who was also memorable because she was cute, warm and friendly).
...and here is where things go bad.
Unlike doktors Alexander and Geary, the new surgeon didn't fuck around. He evaluated my arm, and he got right to the issue.
See, last year around this time I had a surgery on my arm. Let's call it The First Surgery. It is from this surgery where everything goes wrong. During The First Surgery, Dr. Alexander placed a shunt, a small piece of plastic, near my wrist to repair some damage to the artery used for my dialysis access. This worked so well that it increased the bloodflow into my arm - but not out of it. That's when the problems with the swelling, and the hurting, and the hassle of having to keep it elevated began. Later they did another surgery to graft a vein to the artery to increase the bloodflow out, and it worked. Life was good.
That didn't last long. Around the visit in January my arm started swelling again. Like, whoa. I was in an amazing amount of pain before that fateful visit to the ER. One of the advantages to that whole dying thing is they gave me a whole lotta antibiotics. It worked wonders. The swelling went down, things looked good, and I went home. But as anyone who has kept track of my blog in the last 6 months knows, things didn't stay good. My arm kept having problems. Wounds that wouldn't heal, bleeding that wouldn't stop, and eventually a hole that had to be sewn shut.
A decent doktor might have recognized this at the time and done something about it. A decent doktor might have told me what the fuck was going on so I could ask that something be done about it. I no longer think of Dr. Alexander, or his associate Dr. Geary, as decent doktors.
Dr. Barnatan (that's the new guy) looked at my arm for 5 minutes.
"Is there a piece of plastic in there?"
Yeah, there is.
"It's infected. It needs to come out." And with that he jumped into action ordering around The Resident to get files from Dr. Alexander's office, getting scans, and calling in the other surgeons in the office. I don't know if the guy will prove any more capable with a scalpel than the previous douchebags, but at least he doesn't fuck around.
That not fucking around, though, has a side I didn't enjoy as much.
"You're looking at the loss of your arm."
.
.
.
I don't really have anything to follow that up with. It's only been a few hours since I heard the words the first time. They still stop me in my tracks. Right now my left hand is resting on the keyboard. I wonder how many more times it will press the keys. When I left the hospital I bought a mocha at the coffee shop downstairs. It was almost burning my hand through the cup, but I know well that the last things you feel before you lose something become really important later on. I want to remember my hand burning. I want to remember the feeling of my left hand on keyboards, around soda bottles, and in Cody's hair. If all I'm going to have is memories of a hand, I need more of them. There was also a donut with that mocha. I tore it into chunks while I ate it (something I never do), just so I had a memory of what a donut felt like being torn apart in my left hand.
It's crazy the things I do when I know I'm losing something. I know.
Since hearing those words there have been attempts to change my outlook. That's not definite. It's a worst case scenario. This doktor will find a way. I don't want to go into the details of everything he said. Exact recount of his explanation is only going to make me feel worse, and I've had enough of this for today. I'm not hopeful. That's all I'm going to say about it.
The first thing I did was call Ellen. I've told her a lot of bad news over the years. She's heard even more from the mouths of doktors, nurses, and various hospital personnel. Ellen's not new to my bad news, but this was a new one. True to form, though, she started with optimism. She practices what's called "magical thinking" in the sense that she believes in magic, and she believes thinking has a lot to do with it. Yeah, she's one of those. I don't hold it against her. Knowing what she's been through, just what she's been through with me, I won't belittle anything that helps her get through her days. Hell, right now I wish I believed as she does.
I wish I believed in anything other than the inevitable failure of hope, and the inescapable certainty of a lonely and painful death.
sidenote: I have believed in magical thinking. I won't say anything about it except that I hold it like I hold most belief systems - in doubt. Every set of rules someone uses to explain a universe they don't really understand is flawed, but if it works for you - if it gets you out of bed on the days when your kid calls you and says doktors may be cutting his arm off - it's all good in my book.
Even as I type she's getting together her spooky, metaphysical friends to do some spooky metaphysical meditation and send me all the love and good wishes they can muster. She's also looking at getting on a plane and coming up here. Some steps are being taken to help in the physical world as well... she's not a complete nutjorb.
The second thing I did was text Cody. That's the girlfriend's name. Hopefully she won't mind her name being in the blog, but it seemed a lot nicer than referring to her as The Girlfriend.
She made me smile. That's really all I think that matters out of that conversation. I admit, I'm really nervous about this. It's all painfully unfair. A bright spot in an otherwise horrifying year, she's meant something to me over the last 6 months. The meeting in person was a cementing of feelings I'd been trying to ignore.
I like this girl. She makes me happy, and for some strange reason she wants to spend time with me.
I'm a mess. I've been a mess for a very long time now. I don't hide it, and I don't pretend I'm something I'm not. Obviously, I don't date much. So when someone comes along, gets a look at the mess that is my life, and says "I want you," it's... well it's fucking awesome. I've been riding high on this feeling since the day she landed in Portland.
But now there's this. I already look in the mirror and see a monster. Cut up, pieced back together, and stuffed into an ill-fitting flesh suit. A whole limb missing with the rest of it... that's a new degree of mess. For someone that's only met me once, when the connection is so new and fragile... it seems like too much. I see one more bright spot dimming.
But maybe Ellen and her friends will slip into their meditative states, contact their unseen friends, and they'll pull their magical strings for a miracle. If you ask them, they've done it before.
Wouldn't it be nice if it were just that easy.
From here begin the tests. The way the doktor was running around I think he wanted me admitted and in surgery tonight. Thankfully he decided to get more intel. I got an ultrasound done on my arm, and they ordered a CT scan (aka cat scan) for Friday. He's getting files from the former surgeons to find out what shape my arm is really in, and what exactly, if anything, can be done to keep the blood flowing to my hand and through my arm once they pull out the infected chunk of plastic. The guy doesn't seem like an idiot, or a douchebag, and that gives me a little bit of hope.
My next appointment is next Wednesday. I expect on that day to hear a plan.
This day began at 10pm last night when I woke up after a brief nap. Dialysis was rough on me. When I say rough I mean painful. I don't know why, but when they use the new access (the cadaver vein graft in my upper right arm) it cuts off circulation to my right hand. My left hand has had problems with circulation during dialysis for a while now so it's no surprise to me when it falls asleep, but when both hands fall asleep - that's new. Again, there's a term here that might need some clarification. When I say my hands "fell asleep" I don't mean they were kinda tingly, and a little numb. No, they were completely useless. I could barely move my fingers, but had the lovely sensation of them being bombarded by a million needles of lidocaine.
If you've never tried to tie your shoes when you can't feel your hands, you should. Or better yet find someone else you can laugh at while they try to do it. It's a good show, I promise.
So after that I needed some rest. I got 3 hours. Thus begins the long night.
My arm is fickle. Although not a seperate entity, it behaves in ways independent of the other limbs, and in defiance of the steady, predictable logic that my mind enjoys. Sometimes it hurts like all hell. Sometimes it doesn't. Surprisingly when it hurts most is after dialysis, when it is in the process of shrinking. The blood and trapped fluid flow out of my arm, the muscles contract, and suddenly my whole arm is alive with burninating. Nothing seems to help but good 'ol painkillers. I'm staying away from the hard stuff, so my old buddy Advil has been close at hand. 600mg every 4-6 hours as needed to make the hurting stop. Last night I needed it. My arm had decided it was time to light up every nerve in my arm just to remind me that it could.
I had an appointment today with the new vascular surgeon at 1pm. I thought that would be late enough that even I could manage a good night's rest beforehand. Not so much. There was no sleep, only Zuul... I mean Bioshock. 5 total hours of running through a FPS version of someone's high school English paper deconstructing Ayn Rand. The metaphors were heavy handed, but I wasn't really playing to ponder Objectivism and morality. I wanted to kill things. Fake things. Things that disappear with a click of a button. Bioshock had a lot of those, and it was so so satisfying.
Wouldn't it be nice if it were just that easy.
But along with the thrill of bashing in the heads of psychotic, doped up, genetically and surgically altered aristocrats, I did get a few smirks from killing Andrew Ryan and Atlas.
Once the daze of a job well done wore off I realized the sun was coming through the window. Another wasted night maybe, but I enjoyed it. It was mine to waste, after all. In hindsight I'm glad I spent it the way I did. There may not be anymore nights like that next week.
The morning hours passed slowly while I waited for the cab to show up to drive me off to this first meeting with the new surgeon. He would be the replacement to Dr. Alexander. After a year of letting that twat fuck up my arm I decided to let someone else have a shot at it. Supposedly the vascular surgeons over at Emanuel Hospital are some of the best in the state, so that's where I went. It was a long time coming, and I should have gone months ago. At the very least, weeks ago.
The cab dropped me off at 12:45. 30 minutes early, but time enough to get a look around the hospital and do all the paperwork and insurance bullshit I have to go through with every doktor. Seriously, you'd think I could keep that info on one of those USB mini-flash drives or something. I could hand it over, let them plug it in to their computers and POW insta-medical file. All the same stupid questions every doktor, hospital, ER, surgeon, anesthesiologist, and random clinic goes over on every visit. Unfortunately that would leave me nothing to do during the obligatory 30 minute wait that accompanies any and every doktor visit. I think it's part of their code. Do no harm, and make them wait.
Eventually I got into the exam room where I got to watch the nurse try and find my pulse. It's a fun game that started last year because of the damage to my vascular system. Nurses can't find my pulse. It freaks them out, and I get a laugh out of it. Not that I usually laugh at the nurses, but it's the newer, lesser skilled ones, that can't figure it out. Laughing at noobs is important. It makes them better people. More importantly, I get to laugh about something.
You might think that after the nurse comes the doktor. Not so. First I got The Resident. I put her name in caps because she stood out. She walked into the exam room like it was hers. The questions she asked were all done with an exasperated, let's get this over with air. I caught the rolling of her eyes as I started to list the reasons I had come to the surgeon. The attitude dropped quickly when she took a look under the bandage on my arm. She was thoroughly unprepared for who and what she was about to encounter. It's pretty funny to watch in a matter of seconds someone go from a self-respecting, together soon-to-be doktor to a confused, twenty-something kid looking for someone to tell them what to do. Even better was when the real surgeon showed up and started ordering around The Resident like she was The Secretary (who was also memorable because she was cute, warm and friendly).
...and here is where things go bad.
Unlike doktors Alexander and Geary, the new surgeon didn't fuck around. He evaluated my arm, and he got right to the issue.
See, last year around this time I had a surgery on my arm. Let's call it The First Surgery. It is from this surgery where everything goes wrong. During The First Surgery, Dr. Alexander placed a shunt, a small piece of plastic, near my wrist to repair some damage to the artery used for my dialysis access. This worked so well that it increased the bloodflow into my arm - but not out of it. That's when the problems with the swelling, and the hurting, and the hassle of having to keep it elevated began. Later they did another surgery to graft a vein to the artery to increase the bloodflow out, and it worked. Life was good.
That didn't last long. Around the visit in January my arm started swelling again. Like, whoa. I was in an amazing amount of pain before that fateful visit to the ER. One of the advantages to that whole dying thing is they gave me a whole lotta antibiotics. It worked wonders. The swelling went down, things looked good, and I went home. But as anyone who has kept track of my blog in the last 6 months knows, things didn't stay good. My arm kept having problems. Wounds that wouldn't heal, bleeding that wouldn't stop, and eventually a hole that had to be sewn shut.
A decent doktor might have recognized this at the time and done something about it. A decent doktor might have told me what the fuck was going on so I could ask that something be done about it. I no longer think of Dr. Alexander, or his associate Dr. Geary, as decent doktors.
Dr. Barnatan (that's the new guy) looked at my arm for 5 minutes.
"Is there a piece of plastic in there?"
Yeah, there is.
"It's infected. It needs to come out." And with that he jumped into action ordering around The Resident to get files from Dr. Alexander's office, getting scans, and calling in the other surgeons in the office. I don't know if the guy will prove any more capable with a scalpel than the previous douchebags, but at least he doesn't fuck around.
That not fucking around, though, has a side I didn't enjoy as much.
"You're looking at the loss of your arm."
.
.
.
I don't really have anything to follow that up with. It's only been a few hours since I heard the words the first time. They still stop me in my tracks. Right now my left hand is resting on the keyboard. I wonder how many more times it will press the keys. When I left the hospital I bought a mocha at the coffee shop downstairs. It was almost burning my hand through the cup, but I know well that the last things you feel before you lose something become really important later on. I want to remember my hand burning. I want to remember the feeling of my left hand on keyboards, around soda bottles, and in Cody's hair. If all I'm going to have is memories of a hand, I need more of them. There was also a donut with that mocha. I tore it into chunks while I ate it (something I never do), just so I had a memory of what a donut felt like being torn apart in my left hand.
It's crazy the things I do when I know I'm losing something. I know.
Since hearing those words there have been attempts to change my outlook. That's not definite. It's a worst case scenario. This doktor will find a way. I don't want to go into the details of everything he said. Exact recount of his explanation is only going to make me feel worse, and I've had enough of this for today. I'm not hopeful. That's all I'm going to say about it.
The first thing I did was call Ellen. I've told her a lot of bad news over the years. She's heard even more from the mouths of doktors, nurses, and various hospital personnel. Ellen's not new to my bad news, but this was a new one. True to form, though, she started with optimism. She practices what's called "magical thinking" in the sense that she believes in magic, and she believes thinking has a lot to do with it. Yeah, she's one of those. I don't hold it against her. Knowing what she's been through, just what she's been through with me, I won't belittle anything that helps her get through her days. Hell, right now I wish I believed as she does.
I wish I believed in anything other than the inevitable failure of hope, and the inescapable certainty of a lonely and painful death.
sidenote: I have believed in magical thinking. I won't say anything about it except that I hold it like I hold most belief systems - in doubt. Every set of rules someone uses to explain a universe they don't really understand is flawed, but if it works for you - if it gets you out of bed on the days when your kid calls you and says doktors may be cutting his arm off - it's all good in my book.
Even as I type she's getting together her spooky, metaphysical friends to do some spooky metaphysical meditation and send me all the love and good wishes they can muster. She's also looking at getting on a plane and coming up here. Some steps are being taken to help in the physical world as well... she's not a complete nutjorb.
The second thing I did was text Cody. That's the girlfriend's name. Hopefully she won't mind her name being in the blog, but it seemed a lot nicer than referring to her as The Girlfriend.
She made me smile. That's really all I think that matters out of that conversation. I admit, I'm really nervous about this. It's all painfully unfair. A bright spot in an otherwise horrifying year, she's meant something to me over the last 6 months. The meeting in person was a cementing of feelings I'd been trying to ignore.
I like this girl. She makes me happy, and for some strange reason she wants to spend time with me.
I'm a mess. I've been a mess for a very long time now. I don't hide it, and I don't pretend I'm something I'm not. Obviously, I don't date much. So when someone comes along, gets a look at the mess that is my life, and says "I want you," it's... well it's fucking awesome. I've been riding high on this feeling since the day she landed in Portland.
But now there's this. I already look in the mirror and see a monster. Cut up, pieced back together, and stuffed into an ill-fitting flesh suit. A whole limb missing with the rest of it... that's a new degree of mess. For someone that's only met me once, when the connection is so new and fragile... it seems like too much. I see one more bright spot dimming.
But maybe Ellen and her friends will slip into their meditative states, contact their unseen friends, and they'll pull their magical strings for a miracle. If you ask them, they've done it before.
Wouldn't it be nice if it were just that easy.
From here begin the tests. The way the doktor was running around I think he wanted me admitted and in surgery tonight. Thankfully he decided to get more intel. I got an ultrasound done on my arm, and they ordered a CT scan (aka cat scan) for Friday. He's getting files from the former surgeons to find out what shape my arm is really in, and what exactly, if anything, can be done to keep the blood flowing to my hand and through my arm once they pull out the infected chunk of plastic. The guy doesn't seem like an idiot, or a douchebag, and that gives me a little bit of hope.
My next appointment is next Wednesday. I expect on that day to hear a plan.
<3